The unique experiences of raising a brain-injured child and her two brothers.

Tuesday, November 12, 2013

My Privilege

I passed him and his wife every Sunday for years. Each week, the elderly couple would enter the sanctuary, the wife obviously being helped along by her mate. I watched over time as she regressed from walking, to shuffling, to sitting in a wheelchair, pushed by her husband. Each Sunday, they sat in the back of the church near my family. He tended to her every need, and spoke to her in hushed tones. She was clean and well kept, obviously the object of his love. We didn’t speak, but instead shared smiling glances and cheerful nods of the head. I never would have guessed, at the time, that this older stranger and I would have so much in common.

Pulling up to our church several weeks ago, Chris and I determined that Elise needed a diaper change before going in. With a growing girl still in diapers, this creates a challenge with not many options. Chris laid her in the back of the van, and I used a blanket as a shield between her and the rest of the world. My favorite gospel CD, (Angel Band: The Hymn Sessions by Andrew Greer), was playing as we worked. Our concentration was broken by the sound of a new voice joining in on the old hymn, obviously familiar with the words. As I turned around, there stood the man in a state I had never seen him before -- alone.

We introduced ourselves, and gave each other a hug. When I questioned him on his wife’s whereabouts, he tearfully gave me the bad news. In his words, “She went home to be with the Lord on Tuesday.”

After giving him my condolences, I told him that I was sorry for his loss, but also happy for her to be with the Lord now. I wasn’t sure if I should have said it that way, but my fears were assuaged when he looked me in the eyes, tears filling his, and replied, “I know you understand that.”

It was then that I knew that we felt the same, something only few could comprehend. We could relate. He knew exactly what it’s like to love someone so much that you want them here with you forever, yet at the same time, you want them to be restored to health and pain free with their Creator.

I slowly realized that this old gentleman and I had some unexpected similarities in our lives. Not only did we share in our feelings of life and death for our loved ones, but we also both knew what it was like to spend years with someone who was completely dependent on you and others around them.

Dependence:

1. Relying on or needing someone or something for aid, support, or the like.

2. reliance; confidence; trust:

I’ve never been the dependable type. Not only did I leave a friend’s child at preschool several years ago, (sorry again about that, Cason), but just this year I completely forgot to pick my own 4-year-old up on his second week of preschool. I missdoctors’ appointments, show up at wrong times for meetings, dentist visits, and even Bible study. Just an hour ago, I plucked my 11-year-old out of the backyard of a neighbor, threw him in a friend’s minivan, and yelled, “I forgot about your piano workshop!”, as his panicked and confused face drove away. I’ll make it up to him tonight with a later bedtime or extra dessert. I never claimed to be Carol Brady. The way I see it, I fall right between the mom from Malcolm in the Middle and Roseanne. (Maybe that’s an exaggeration!)

I depend on family members and understanding friends to alert me to upcoming events, or double check that I remember where I’m supposed to be (Keep it up, ladies!). When it comes down to it, I have had to learn to be more dependable. When taking complete care of another human being year after year, there is not much room for error. Thankfully, I have my act together when it comes to caring for Miss Elise.

I thank God for my daughter’s complete dependence on me. OK, I admit that is a strange thing for a mom to say. I have tried to make it a habit over the years to thank God for Elise and everything about her. This does not mean that, if given a chance, I would not rather her be restored to perfect health, resulting in her complete independence. I would give my life for that. But, if she must be who she is on this earth right now, this is my attitude. It is something that is extremely helpful to me, constantly tugging me away from prayers filled with sorrow. She is who she is. She can’t do what she can’t do. Let’s find the good in all that she is.

I take complete advantage of Elise’s dependence on me. I use it to form an unbreakable bond that most mothers of typical children don’t know, and I will never have with my boys, either. Year after year, her dependence on me means we spend a large amount of time together, one-on-one. She relies on me and others for her every need. The obvious ones are for food, water, diaper changes, and her healthcare. Beyond that, though, Elise’s dependence on others runs much deeper. If her arm or leg becomes twisted or stuck in a bad position, she can’t free herself. She depends on us to decipher each cry and know what it means. If she chokes on her own saliva while lying down, she can’t turn over to clear her airway. When an eyelash finds its way into her eye, there is nothing she can do to help herself. She is at the bottom rung of independence, leaving her to rely on the people around her to care and react for her. These personal-care needs that look like a huge burden on paper, are actually the catalyst that bring us closer together.

I see Elise’s total dependence on me as a gift. Yes, it can be daunting. There’s no talking, joking, shopping, or school projects. There’s no need for punishing, questioning, teaching, or training. Ours is a very basic relationship, made more dynamic through care.

My favorite night of the week is Wednesday. Chris takes the boys to Lane’s soccer practice. This leaves me with only Elise to fill my time. I feed her, bathe her, and wash her baby face. Then, I massage her tight muscles with lotion, put mousse in her hair, and brush it for a half hour (She would sit for days if having her hair brushed.) I put her pajamas on and brush her teeth. Next I stretch her arms, legs, spine and neck. Putting on her leg braces, I settle into a chair in her room for some rocking.

Those are the best times I have with my daughter! I’ve got all I need from her, right there in her little room. I have her, pure and simple. This is how I get to know Elise. This bond we have formed is a relationship unique to us. I will not dwell on the fact that she is completely dependent on me, but instead I will delight in what that vulnerability brings.

This type of need mirrors our dependence on Jesus Christ. I have found that, just as Elise would suffer if she didn’t have us to rely on for every area of her life, we too greatly suffer when we turn from our dependence on Christ, foolishly declaring our independence instead. Forgetting to lift up our problems and worries to him, we choose to needlessly carry them around on ourselves. Going on with our lives, we make decisions based on what feels right to us, when He holds a much better plan, just waiting to be called on. Nobody can do for me what the Lord can. God has provided for me an illogical peace when it comes to Elise's life.

Elise’s life has also taught me that reliance on others can be a beautiful thing. I admit to a strong dependence on my husband, my friends, my church, my family, and most importantly, the Lord. Don’t fool yourself into thinking you need no one. In our constant struggle to prove ourselves independent, we lose the very necessary dependence that our eternity relies on.

I’ve always been slow to ask for help from anyone outside of family. Thankfully, we have been surrounded by people who have no problem forcing it! Over the years, our Sunday school class has propped us up by bringing meals, babysitting the boys, helping with fundraisers, praying for our family, and even helping out with therapy in the earlier days. Neighbors watch her while I run to pick something up, or sit with the boys in case of an emergency requiring a run to the hospital. The thousands of unspoken prayers lifted up for Elise by friends and strangers alike carry much weight when it comes to getting through each day with a smile on my face and joy in my heart! As much as I am depended upon by my daughter, I have found my own personal sanity hinging on each and every one of these people, eager to help any way they know how.

I now know the elderly man’s name. Mr. Hurst and I speak every time we pass at church, and each meeting leaves me a little wiser. Small talk is not welcome between the two of us. His words to me not only lift my spirits, but they solidify the fact that I have much to learn in my own personal journey with dependence. In a past conversation, I once mentioned that caring for his wife/my daughter was and is our job. He improved on my wording by correcting, “It is not our job, it is our privilege.” What a wonderful way to look at something that the world may see as demanding, exhausting, and a potential life-impeding situation. Instead, the word “privilege”, paints a truer picture of our realities. It is my honor, my pleasure, and and my desire as Elise’s mom to be the one she relies on throughout her life.

Other than just getting to know my new friend at church, I have delighted in the ideas that he has planted in my consciousness, always leaving me with more understanding of God’s role in my situation than before we talked. I am eager to share what I learn from him with my kids. Certain words shared from the older to the younger, will find a permanent home in the wisdom passed down from each generation to the next.

When speaking with him several Sundays ago, a friend walked up and complimented him on his unending dedication and caring of his late wife. He responded that it’s not “who” we are, but, more importantly, “whose” we are. I know “whose” I am, and so does he. Even with this knowledge, it is important that we are never to forget it. This proves to be a strong truth to lean on in our hardest of days.

What played out in their lives was not what they planned on, and I surely didn’t see this as my future (Who out there hasn’t been surprised with how something in your future turned out?). How wonderful that my future has included a child who is blessed to bless others! She is my testimony, as his wife was his.

What an unlikely pair we are! He is a senior citizen, and I am still raising little ones. He cared for his aging spouse, while I’m attending to my little girl. It’s true that most of us usually surround ourselves with people who are like us in age, lifestyle, or beliefs. I find myself walking into circles of friends, only to gravitate to the outer edges of the group, not able to find connections that satisfy all the areas of my life -- mainly being the mom of a severely brain-injured child. Essentially, there’s not really anyone around me that's like me, experiencing the same things with their family. Other than a couple of FB friends who have kids like Elise, I am alone in this land of extreme special needs. It’s a magnificent thing that the two of us, Mr. Hurst and I, with such opposite looking lives, can find themselves sharing not only an experience, but also a trust and love of God. This is where our commonality lies. Isn’t that all that matters in the end?

Whether it’s a man attending to his wife in their golden years, young parents caring for their growing baby, a weary mother and father supporting their teen through tumultuous years, or a family like ours, looking after a special-needs child, we are all the same when it comes down to it. We all depend on others, and others dependon us. Even if you aren’t aware of that fact, it is true. If you allow it, it can come full circle. I have decided to start trusting God more for what I need, just as Elise relies on me to provide for her physical needs, affection, comfort, and companionship.

In an odd way, I will miss caring for someone as fully as I have for Elise when she is no longer here. No matter how many more years I have of changing her diaper, tube feeding her, dressing her, undressing her, bathing her, brushing her teeth, transferring her, taking her to doctors’ appointments, consoling her, medicating her, stretching her, worrying about her, and above all else, loving her, I will do it with happiness in my heart. This is a happiness that comes only from knowing who gave her to me, trusted her to me, and will one day take over for me. Thank you, Lord, for showing me my dependence on you, through my daughter’s dependence on me.

Elise with her new friend, Mr. Hurst.

Elise depends on me for comfort when she is sick...

She depends on caring friends to connect with her...

She depends on the kindness of anyone willing to brush her hair! (an absolute favorite activity)

Elise depends on others for some much needed TLC and companionship...

She depends on us to medicate her...

And feed her...

Elise's dependence on us for eating will never end. I thoroughly enjoy feeding her by mouth (puree), as it is an uninterrupted time of closeness for us. Tube feeding her is second nature to us by now. I thank God for Elise's feeding tube. Without it, life would be much more difficult (she needs it for all liquids and medications).

Like any other child, she depends on her Mama for some snuggle time...

She depends on those who shower her with love and celebrate her life...

She depends on us to include her in our lives...

What do I need in return from Elise? Not much. I do, though, depend on her to give me one of these every once in a while... I couldn't ask for anything better!

That dependence does create a special bond. As the mother of a CMV daughter as well, I treasure it. It's difficult for others to understand or even appreciate. It's more difficult to even share with them. Thanks for speaking your heart (for all of us).

Ashley, what a story of beauty. You are Christ manifested in this world through your love and care. It is through your heart, through your arms, through your tears that "He" exists in this physical reality. Thank you for demonstrating that He, indeed, has risen. Christ in you, the hope of glory.Barbara Symons

You are the best mother who takes very, very good care of your daughter Elise. She is the cutest young 9 year old with a big heart. I know it's hard work taking care of little Elise, but you're doing a great job Ashley, you & your husband both, I also know it's tough while on the road going places like church, to the park, anywhere, I wish I was living close to all of you & if I had a nice clean van with windowless back doors, you can use it as a changing room, if Elise needs her diaper changed. But it's just a thought, Elise a cute little sweetheart who does depend on everyone, especially you Ashley. Please let me know if there's anything I can do. I wish I would come to give Elise a gentle hug & give a kiss on her forehead. Love James